8 May 2024

Lupus patients often struggle with intimacy and sexual activity because they fear that their issues will be rejected by their partners, cause flares in their condition, or worsen their condition causing the need for medical intervention. Their mental outlook often suffers for fear of these same reasons. Here you can learn about Lupus and intimacy, and how to work through difficulty caused by this medical condition.

Lupus affects the joints, skin, kidneys, blood cells, brain, heart, and lungs. Symptoms often vary between patients, but can include extreme fatigue, joint pain, rash, and fever. While there is no set cure for Lupus, there are things that can help to plateau the condition and keep flares and symptoms from worsening. These include lifestyle and dietary modifications, protecting yourself from the sun, and following your doctor’s recommendations for medications and treatment plans.

Physical Challenges with Intimacy and Lupus

Multiple factors impact the sexual need and function for Lupus patients- both males and females. Changes in physical ability and desire for intimacy are the most common, along with:

  • The disease itself
  • Medication and treatment side effects
  • Psychosocial factors like mood changes, negative body image, or the way the patient feels about themselves.

The more severe the case of Lupus for the patient, the more sexual difficulties and insecurities one will have. Physical effects of the disease in some females include:

  • Pain
  • Decreased vaginal lubrication and moisture,
  • Limited range of motion in hips, knees, and other body joints.

Males with Lupus face higher rates of overall sexual dysfunction and impotence. Chronic pain, stiffness, fatigue, and medications also decrease libido across the board.

Psychological and Emotional Effects of Lupus

Sexual intimacy is not the only type of intimacy impacted by Lupus. Emotional intimacy and spiritual intimacy are also affected. Emotional intimacy is often linked to sexual dysfunction more so than the actual disease itself. Some of the psychological factors affecting intimacy are:

  • Body image. Having a positive body image is important, but when facing a disease that feels never-ending, this can become impossible. Patients might gain or lose weight, lose their appetite, or experience other problems related to their illness, such as joint deformity, hair loss, rash or other physical effects that can change one’s body image and perception of self.
  • Self-esteem. Patients with lupus can be bombarded with many challenges to their self-esteem. Some people might have to leave their jobs or cease other activities or social engagements, and this can make people feel less self-confident and worthy. Regarding their sexuality, defining attractiveness and beauty in one’s own way and for one’s own self can help restore some of the lost self-esteem. Being able to have a good sex life and an intimate relationship with a partner can also bolster self-esteem.
  • Desire and interest. When a patient is experiencing pain, vaginal dryness, limited mobility, and other physical symptoms, these can decrease their feelings of desire and interest, which lessen their overall interest in intimacy or being sexual.
  • Depression. Depression is increased in patients with lupus and may stem from immediate and long-term health concerns, ongoing pain, financial stresses and even the effects of the disease itself. Changes in one’s appearance and associated feelings about body image, worries about partner interest, and other challenges can also lead to illness-related depression and anxiety. This can, in turn, diminish sexual activity and intimacy.
  • Anxiety. Anxiety builds from not knowing how this disease will affect the patient from day to day. Building depression also contributes to heightened anxiety levels.

Lupus Effects within the Relationship

Many Lupus patients fear that their partners will leave them due to their disease, or their inability to live a “normal” life. These extra concerns often compound the “regular” concerns that occur within a relationship, including finances, job loss, childcare, future planning, etc. Any or all these issues can have a detrimental effect on the intimacy in a relationship. That said, sex is a good thing when it comes to the physical and emotional health in our relationships. Sex reduces the risk of death, reduces stress, improves sleep, and helps cultivate strong partner relations.

The diagnosis of Lupus or other long-term diseases may cause a shift in the relationship roles within a couple. Many will feel that they are bringing down their relationship by not being able to hold up their end of the bargain, or relationship, so to speak. Flares of the disease may also bring on feelings of guilt, shame, anxiety, or resentment- sometimes even blame. In these situations, sexual relationships will suffer as well. By sharing these feelings and emotions safely within your relationship, this can help to keep the quality of intimacy and sex alive.

Strengthening Emotional & Physical Intimacy

There is a focusing technique called “sensate focusing,” which helps you to focus solely on the needs of your body and the needs of your partner- while engaging in sexual exercises that avoid genital contact. The goal of this method is not to orgasm, but instead to learn more about yourself and your partner. This method removes the pressures of orgasm and focuses on connection and pleasure.

An example exercise for couples at home:

  1. Decide who will be giving and receiving to begin.
  2. The receiver then closes their eyes or is blindfolded- their preference.
  3. The giver can explore their partner’s body with their lips, hands, tongue, or arms and legs- avoiding all genital contact.
  4. The receiver then shares which areas and touch feel the best to them.
  5. Then, trade places. Take at least ten to fifteen minutes- or longer, for each person so the entire body can be touched.

There are many ways to express and receive love and intimacy without having intercourse. Some of these include:

  • Touch: Explore your partner’s body. This can include holding hands, cuddling, stroking, kissing, etc.
  • Self-stimulation: Masturbation is normal and healthy. This can even occur during sexual activity with a partner. You can simply use your hands, or you can use specially made devices to heighten your masturbatory pleasures. Also consider using devices on your partner, which helps to broaden sensitivity and heighten pleasure.
  • Oral sex: This can be an alternative or supplement to intercourse. Be sure to practice safe oral sex by using dental dams or condoms.
  • Different positions: Change your positions to what feels more comfortable for you, such as kneeling or sitting. You can go online or to the library to get additional resources. Certain positions may be difficult for those patients with Lupus as joints are often affected. Be considerate when trying or requesting new positioning.
  • Vibrators and lubricants: These are additional ways to add pleasure. If there is an issue with vaginal dryness, you can purchase an over-the-counter lubricant or speak to your doctor about a prescription product. Be sure the lubrication you choose does not have additives or extras that can further dry out the skin causing uncomfortable and painful tearing. Vibrators can help to ease nervous and tired tissues, and help to welcome the pleasure.

Practice Open Communication with your Medical Professionals

Sexuality and intimacy are two of the most overlooked topics of discussion in the healthcare community. These questions are not routinely asked, nor answered, as many medical professionals do not have the time, or the insurance codes, to be paid for their extra time spent rendering services. Many other physicians are also not trained in sexuality or intimacy and are unsure of how to approach the topic.

On the flip side, patients are often uncomfortable discussing their sexual adventures or desires with the medical professionals who are working to save their lives. Fear, religious beliefs, community, and age are also factors that prevent patients from openly discussing these topics. That said, sexual function and dysfunction are perfectly legitimate topics to discuss with your medical care team. It is appropriate to address these concerns with your medical doctor, rheumatologist, gynecologist, therapist, or social worker.

Communication within your Relationship

As you begin to prepare to have a conversation with your partner about intimacy and sex, consider these key questions to help get you started:

  • Are you comfortable talking about sex?
  • What are some of the sexual messages you received growing up? (They may be cultural, generational, religious, etc.)
  • How did you learn about sex?
  • How did your parents show affection towards each other?
  • How often do you communicate about your sexual needs and desires?
  • What are your fears and inhibitions around sex?
  • Do you feel you have a healthy attitude towards sex?

Once you are ready to have the discussion, consider these steps to keep you on track:

  • Discuss with your partner your potential fears and desires. Being attentive during this discussion is crucial for both partners to really understand each other.
  • Use “I” statements instead of “you.” For example, “I feel cared about when you hug me and hold me close,” instead of “you never touch me anymore.”
  • Address issues of miscommunication. For example, you might feel your partner thinks that you are undesirable, but he or she might not want to engage in any activities because he or she may not want to physically hurt you in the process if you are having a lot of body aches and pains.
  • Find a neutral place at home to start a conversation.
  • Build in a set time to talk and check in so that you are not talking only when problems arise.
  • Couples can have busy lives, so it is important to spend quality time with each other away from your children and responsibilities each week. Even 20 to 30 minutes together, like taking a shower together in the morning, can be effective. Create a ritual.

Making the Good Sex even Better

In some moments, you must consider counteracting the physical symptoms of Lupus. This means:

  • Optimize control of disease activity with your rheumatologist.
    • Pursue and maintain medications that will control disease and may lead to reduced pain and fatigue.
    • Adjust medications that may have a negative impact on sexual desire as appropriate.
    • Consider physical therapy to improve joint range of motion and muscle strength and lessen pain. One study has even shown improved sexual satisfaction among rheumatoid arthritis patients who had total hip replacement surgery to treat destructive arthritis that had been limiting the range of motion in their hips.
  • Deal with main triggers such as pain and fatigue.
    • Plan sexual activities when pain is mildest (e.g., towards the evening if pain is less prevalent at that time).
    • Take pain medications one-half hour prior to sexual activity (upon your physician’s approval).
    • Place yourself in a comfortable position (e.g., a spooning position that takes pressure off painful areas of your body).
    • Make sure you are well rested before engaging in any activities. A nap beforehand can be helpful in enhancing your sexual encounter.
  • If you experience vaginal dryness or a yeast infection, talk to your doctor. Lack of lubrication due to vaginal dryness has been identified in studies as an important negative factor. Use vaginal lubricants if this is an issue.
  • If you experience vaginal pain and tightness, consider trying dilator therapy.
  • Encourage foreplay and massage, which give your body time to respond to stimuli.

Tips for Improving Sexual & Emotional Relationships with your Partner

Consider:

  • Communication is vital; talk to your partner.
  • Stay relaxed.
  • Try new things and take risks.
  • Be playful.
  • Explore, explore, explore.
  • If there are any problems, do not get discouraged but keep trying.
  • If you need additional guidance, seek help from a therapist or specialist.

Tips on Improving your Mood and Body Image

  • Mood issues or negative feelings can be difficult to address on one’s own. Address these issues with your healthcare team, whether it be with your rheumatologist, gynecologist, primary care provider, therapist, or social worker.
  • Therapy or medication can improve depression and anxiety in lupus patients, and this may in turn lead to greater sexual function and intimacy.

The emotional and physical health status of Lupus patients can be improved through open communication, partner collaboration, and open discussing about dysfunction or worries with your medical care team. Staying on top of your treatment plan and making the appropriate lifestyle and dietary changes can also put the patient in a better headspace and help to deal with the side effects of Lupus more easily. It is important to know that there is always a way to work through tough times!

Citations:

National Institutes of Health and Human Services

Centers for Disease Control and Prevention

Lupus Foundation of America